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Old 11-20-2006, 07:33 AM   #481
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Well tomorrow is the big day whenmy son gets evaluated. I dont know why Im nervous because I know he has autism thinking high functioning, but just nervous on how hes gonna act at a different place. Last time he had some type of testing he froze and wouldnt do what he normally does at home.

I just called a place for the autism funding waiver and its an 8 month wait. OUCH!!! Yeah thats gonna help having to wait 8 months to get help.
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Old 11-20-2006, 11:08 AM   #482
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Mishy,
Good luck with your eval. They make me nervous too. Luke has one on Wednesday. The nice thing about having an eval with an autism expert is that they get your kid. They know what to expect and how to interact. So even if you can't get more specialized help than your public school offers right away, they may have some hot tips for you. Also a diagnosis means JR may qualify for more help from the local district. Anyway, I'll be keeping you in my thoughts.
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Old 11-20-2006, 06:30 PM   #483
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Mishy- thinking of you and how the eval will go...

I am new to this thread, my nephew is 5 and severely autistic. He has No words, is not potty trained, and has been with OT, PT, speech, and more therapists than I can remember since 2yrs old. Next week my sister and her family will move him to a Residential home where he will get the best one on one care he needs, 24/7. The 'experts' say there is hope because they will begin working with him at such a young age...

My question to any of you: Do you know of a child who has gone to a Residential Home for Autism, and how can I help my sister? What can I give, in addition to my love and support, to help her and him through this? The home is 1 1/2 hrs away from her home. We are in Massachusetts.

Thank you!
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Old 11-21-2006, 05:32 PM   #484
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well we just got back a couple hours ago. I think he went pretty well He has been diagnosed PDD-Nos.
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Old 11-21-2006, 06:56 PM   #485
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How are you doing? I always get a head-ache after not because of of it went but the relief of it being done
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Old 11-22-2006, 06:52 AM   #486
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thats actually how Im feeling now Now its just the long wait of starting the treatment thru the WI autism waiver. Its an 8 month wait. When he does get help they'll test again to see if things changed in 8 months.
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Old 11-22-2006, 10:36 AM   #487
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Quote:
Originally Posted by mishy
Well tomorrow is the big day whenmy son gets evaluated. I dont know why Im nervous because I know he has autism thinking high functioning, but just nervous on how hes gonna act at a different place. Last time he had some type of testing he froze and wouldnt do what he normally does at home.

I just called a place for the autism funding waiver and its an 8 month wait. OUCH!!! Yeah thats gonna help having to wait 8 months to get help.
wow, you're actually lucky. the maryland waiver waiting list is years long...
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Old 11-22-2006, 12:25 PM   #488
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wow and I thought 8 months wait was crazy. These poor kids.
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Old 11-28-2006, 11:31 AM   #489
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well I found out he scored a 30.5. The CARS scores says 30 and under are not autistic.
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Old 12-02-2006, 04:10 PM   #490
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Mishy, I, too live in WI. I work with kids with Autism. I work for Racine Unified. Anyway, have you had your son worked with at UWM? They are doing some kind of study and a few of the kids in our class have gone there.
My 6 yr. old great-nephew was recently diagnosed in the spectrum too.
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Old 12-02-2006, 06:31 PM   #491
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http://www.youtube.com/watch?v=T4tFCFpH8Vw

very good and interesting!
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Old 12-03-2006, 07:55 PM   #492
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Be thankful for this waiver thing. My son is in Colorado. He is now 10 and we had nothing like that. No help from the government at all.

Quote:
Originally Posted by mishy
thats actually how Im feeling now Now its just the long wait of starting the treatment thru the WI autism waiver. Its an 8 month wait. When he does get help they'll test again to see if things changed in 8 months.
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Old 12-03-2006, 08:03 PM   #493
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Oh Dawn, This sounds horrible. I`ve never heard of this being done for such a young child. My heart goes out to her. I have had to be separated from my son for the last 3 years because of divorce. It has been extremely painful but atleast I know he is with his father and is loved. It`s good that this home is close but does she really have to do this? Couldn`t she keep him at home and have therapists come to the house? Has she tried ABA or Discrete trial? There has to be another answer. I thought the eastern states were supposed to have really good services.

Quote:
Originally Posted by Dawn.MA
Mishy- thinking of you and how the eval will go...

I am new to this thread, my nephew is 5 and severely autistic. He has No words, is not potty trained, and has been with OT, PT, speech, and more therapists than I can remember since 2yrs old. Next week my sister and her family will move him to a Residential home where he will get the best one on one care he needs, 24/7. The 'experts' say there is hope because they will begin working with him at such a young age...

My question to any of you: Do you know of a child who has gone to a Residential Home for Autism, and how can I help my sister? What can I give, in addition to my love and support, to help her and him through this? The home is 1 1/2 hrs away from her home. We are in Massachusetts.

Thank you!
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Old 12-03-2006, 08:08 PM   #494
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This must be hard on you. Do you have any kind of support or help?

Quote:
Originally Posted by Donna519
Holidays are a horrible time for our family. Matthew does not tolerate anyone coming to our home and he will push people right out the door as soon as they come here. Since he is an adult size (outweighs me by 100 pounds) and is very aggressive, we have gotten to the point where we just tell people not to bother.

This year for Thanksgiving, he was having a bad day, so we never got to have our Thanksgiving Dinner at my parents. My sister-in-law is fostering a one year old child, and Matthew attacks people so we chose just to stay away. Everyone understood because they know how he is. Just easier on everyone.

Halloween with kids coming to the door, we decided just to lock up the house, drive into the city and meet my husband for dinner in the city. We took our time, and of course Matthew hurries us through it, because he can not tolerate the noise in restaurants. Crowds are a bad thing for him.

Christmas Day is always a horrible time for us. I think that this year, I might just cook a small turkey and have Christmas Dinner here, just the three of us. Would make things alot easier for our family. We usually go to my parents but with my brother's family there, Matthew acts up even more and will attack them. He thinks he is playing with them, but because of his strength and size, he hurts people. We don't bother going to my inlaws either as they invite about 30 people there, and Matthew wouldn't be able to handle it.
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Old 12-15-2006, 07:01 PM   #495
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Dorinda - Thanks for that link, the video was very interesting.

Also, just wanted to wish everyone a Merry Christmas and Happy New Year.
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Old 12-22-2006, 06:29 PM   #496
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Happy Holidays Everyone !!
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Old 12-23-2006, 09:13 AM   #497
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Happy holidays to you! Hope everyone has a good one.
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Old 12-24-2006, 08:57 AM   #498
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Happy Holidays from our house to yours!

Megan is so excited, waiting for Santa to come.
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Old 12-27-2006, 12:46 PM   #499
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I hope you all had a great Christmas. Ours was long and is not over yet, one more set of grandparents to go.

Have any of you tried the weighted vests for kids with SI? I know sometimes if DS is starting to act up I will place a hand on his back and another on his chest and he seems to calm down. I was looking into these and was wondering if any of you had any input?

TIA!
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Old 12-27-2006, 12:49 PM   #500
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It was okay Jr since hes now into presents this year was a big PITB :hehe: at both gatherings. He wouldn't leave the presents alone. He kept on trying to get the big presents from everyone else and throwing a fits. This is where he got over stimulated and started acting up


We finally got him calmed down after he opened up one of his presents and it was a big thing of legos. He really didnt get that much of toys this year from the grandparents and aunt and uncles he got more clothes since hes getting so tall.

Were not done yet here either this weekend we still have another huuuge family get together which I'm not looking forward to
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Old 12-27-2006, 12:53 PM   #501
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Quote:
Originally Posted by Motherof6
Have any of you tried the weighted vests for kids with SI? I know sometimes if DS is starting to act up I will place a hand on his back and another on his chest and he seems to calm down. I was looking into these and was wondering if any of you had any input?

TIA!
My son (age 5) uses one at school occasionally. It seems to help him focus. If he gets fidgity during circle time (teacher reading books, etc.), they also use a sack of beans/rice. It's rather large (fits across his lap), so he gets the benefit of the weight. In addition, it's something to keep his hands busy - he can 'play' with the beans inside.
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Old 12-27-2006, 08:30 PM   #502
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Mishy, Good luck with your family gatherings. They can be so stressful.

Debbi, Caleb uses a weighted vest at school and loves it. It does seem to calm him. We haven't gotten one for him at home yet. He improvises though. He puts Luke's diaper bag backpack on when he gets overstimulated and that weight seems to help. He might be ASD, but he's got some great problem solving skills.

My guys also really benefit from joint compressions. The Ot showed me how to do them. They give the kids some proprioceptive feedback and help center them.
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Old 12-28-2006, 02:25 AM   #503
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Quote:
Originally Posted by Motherof6
I hope you all had a great Christmas. Ours was long and is not over yet, one more set of grandparents to go.

Have any of you tried the weighted vests for kids with SI? I know sometimes if DS is starting to act up I will place a hand on his back and another on his chest and he seems to calm down. I was looking into these and was wondering if any of you had any input?

TIA!
In the class I work in we have weighted vests and weighted compression vests and a spare backpack with some bean bags (heavy) put into it..all work really well for calming and centering. We even have a denim vest that someone sewed the weighted stuff into the inside of the vest...it may be buckwheat hulls or flax seed...anyway the denim vest looks like a reg denim vest but fullfills the need. You can also make a tube of fabric and fill with buckwheat hulls or whole flax seed..sew closed and this can be warmed or cooled in the micro or freezer...these work well for added weight also. The kind of thing someone would use for sore muscles...can be used for weight, they would be filled fuller than normal but serve a dual purpose.
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Old 01-04-2007, 06:55 PM   #504
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Hi,
Is it too late to join this group? I can't believe I missed this thread for so long!

My DS#2 was diagnosed PDD-NOS at 26 months. He will turn 5 on January 25th. He has come so, so far. I was reading his original report which stated "severe autism". I'm glad that never registered in my head when we first had him diagnosed. I was depressed enough as it was!!! He now plays soccer with typical kids and is attending a typical preschool with an aide.

His biggest issue is and always will be language. He definitely has auditory processing issues, but expressive language is his worst enemy. I'm afraid for him in Kindergarden. With all of the emphasis on reading, language and writing and "sounding it out", the kid is going to be lost. But give him any problem with numbers and he will run with it.

My DS#1 was diagnosed last year with ADHD and an auditory processing disorder. I wasn't surprised, but just kind of disappointed that my other child needed extra help and support.

The fact that both my kids are special needs kind of explains why I have been so insane for the past 7 years!!!!!!!!!! Truly no one was listening to me! When parents say their kids don't listen, they need to come to my house with my auditory processing delayed kids!!!!! LOL!

Has anyone gotten support for their siblings of autistic children? If so, at what age? My almost 7 year old is complaining more and more frequently of having to deal with an autistic brother and how it's not fair, etc. I honestly don't know what to say and just kind of sit there and listen to him rant. Once it's out of his system, he goes back to playing with his brother. He really does love him, but I think just gets overwhelmed sometimes.

Thanks for listening.
Catherine
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Old 01-07-2007, 03:00 PM   #505
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Just wanted to share this:
http://www.nativeremedies.com/autism...id=3592#bottom
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Old 01-07-2007, 09:22 PM   #506
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Quote:
Originally Posted by mustardseed
thanks for sharing! Have you tried any of the products? Sleep has always been an issue and both kids are taking melatonin every night to get to sleep, but am open to other things. DS is also taking flaxseed oil currently because it is supposed to help with the ADHD, does some, but not much. We did straterra a fews years ago, it was okay, not great. While we dislike meds, we're willing to try more natural approaches!
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Old 01-07-2007, 10:36 PM   #507
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No, I haven't. I found it because I am supscribed to a group through Yohoo that sends info on natural remedies and such for health. We don't have many struggles with our son but I know that most parents do so wanted to share it here in hopes that it might be of some help.

Quote:
Originally Posted by dessertlady
thanks for sharing! Have you tried any of the products? Sleep has always been an issue and both kids are taking melatonin every night to get to sleep, but am open to other things. DS is also taking flaxseed oil currently because it is supposed to help with the ADHD, does some, but not much. We did straterra a fews years ago, it was okay, not great. While we dislike meds, we're willing to try more natural approaches!
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Old 01-24-2007, 12:30 PM   #508
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I hope you ladies don't mind if I post here asking some questions. My dd is almost 20 months old. She has albinism(lack of pigment in skin, hair and eyes), and has developmental delays that are associated with sensory integration dysfunction. I am starting to wonder if perhaps she may have aspergers. She has these horrible meltdowns where she just can't control herself, she could probably hurt herself if we didn't pick her up and stop her from hurting herself. She has a high vocabulary for her age but most likely doesn't understand everything she is saying based on the words she says. She sometimes has a hard time adjusting to new situations and doesn't like to be away from me or dh. This is all I can think of right now,I have a migraine, but I know there are other thigns that I was worried about. Anyways, I was just curious if her things were related to aspergers, something else, or if it was all just sensory integration dysfunction.

Any words of advice would help. Oh and she has an occupational therapist, vision therapist, mobility therapist, and will be starting swim therapy in a few weeks.

Anyways, thank you and sorry if this is long or doesn't make sense.
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Old 01-24-2007, 12:57 PM   #509
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I don't know how I missed this thread for so long, and I am crying so hard right now that I can't read the whole thing from the beginning. My 14-year-old son has Asperger's and Tourette Syndrome and OCD. So much of what you are saying here hits home for me. Some days I feel like my whole life is wrapped up in Danny's condition(s). The fear and anxiety never leave me, never for a minute. My heart goes out to all of you who are struggling.
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Old 01-24-2007, 01:16 PM   #510
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Quote:
Originally Posted by CaseyK
I hope you ladies don't mind if I post here asking some questions. My dd is almost 20 months old. She has albinism(lack of pigment in skin, hair and eyes), and has developmental delays that are associated with sensory integration dysfunction. I am starting to wonder if perhaps she may have aspergers. She has these horrible meltdowns where she just can't control herself, she could probably hurt herself if we didn't pick her up and stop her from hurting herself. She has a high vocabulary for her age but most likely doesn't understand everything she is saying based on the words she says. She sometimes has a hard time adjusting to new situations and doesn't like to be away from me or dh. This is all I can think of right now,I have a migraine, but I know there are other thigns that I was worried about. Anyways, I was just curious if her things were related to aspergers, something else, or if it was all just sensory integration dysfunction.

Any words of advice would help. Oh and she has an occupational therapist, vision therapist, mobility therapist, and will be starting swim therapy in a few weeks.

Anyways, thank you and sorry if this is long or doesn't make sense.

It sounds like you have a good support system set up for her. That is always good. I'm sure there are others on this thread that have more experience than I do but my son is almost 4 and was just diagnosed with Asperger's Syndrome. His actual diagnosis changes nothing for what the therapists were already doing for him. I just now have a more accurate picture of what we're dealing with.

I would bring up any concerns with the therapists if you haven't already and they should be able to point you in the right direction. Good luck!
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Old 01-24-2007, 01:30 PM   #511
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muffin, I think that having a sibling with a "difference" must be very difficult, and I applaud you for wanting to take special care with your other child.
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Old 01-24-2007, 04:17 PM   #512
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Quote:
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muffin, I think that having a sibling with a "difference" must be very difficult, and I applaud you for wanting to take special care with your other child.
Thanks for saying it. It sounds like it's tough for everyone here. Even though my friends are supportive, I don't think anyone really "gets it" unless they have a child with a developmental disability.

CaseyK, it sounds like your child's meltdowns are related to the sensory issues AND also just being 20 months old. But that's just me saying this! Sometimes it's hard to remember that our kids DO have typical behaviors on top of their autistic- or asperger-like behaviors too.

And not to freak you out even more, but there are some learning disabilities that are associated with very high language ability at a very early age. I believe one in particular is called NLD (non-verbal learning disability). I wouldn't start thinking about that now though because your child is so young.

As someone said above, be sure to express your concerns to your doctors/therapists, but in the meantime remember that she is only 20 months old. Hope that helps, Catherine
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Old 01-25-2007, 06:07 AM   #513
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Casey, Catherine, and beadfreak - welcome!

Casey, A lot of the syptmoms you described in your daughter could be resulting from her SI dysfunction and her age. Asperger's is usually not diagnosed until children are older. My suggestion would be to continue with her therapies, and talk your concerns over with your doctor. A developmental ped might be able to give you the answers you're looking for. Also, just out of curiosity what kind of things does her OT do with her? Some OTs have more experience than others with sensory issues.
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Old 01-25-2007, 06:25 AM   #514
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Thanks for everyones replies. I think I will talk with her therapists and ped about it.
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Old 01-27-2007, 06:24 AM   #515
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Good morning, everyone. Hope all's well today. Happy Stamping!
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Old 01-29-2007, 09:43 AM   #516
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todays 'The View' is all about autism...they even have Temple Grandin on today
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Old 01-29-2007, 11:41 AM   #517
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Wish I caught it. How was it?
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Old 01-29-2007, 12:11 PM   #518
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Hi everyone,
We finally told my DS about his label (he intitiated conversation by asking why he was different and why things were hard for him) and I was wondering if anyone knows of a good resource for ASD children to read about Autism themselves? He's 8, PPD-NOS and currently asking what actions he does are autistic, "brain farts" and just kid stuff. Looking forward to hearing from you.
Kirstin
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Old 01-29-2007, 01:01 PM   #519
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Quote:
Originally Posted by okiechic
Wish I caught it. How was it?
It wasn't bad, good actually they had kids and parents on and Temple Grandin.
The only thing that bothered me was presenting that kids can 'overcome' or 'recover' from Autism....I was afraid I guess that parents will be given false hopes that there will be or could be a magic fix for autism and it will just go away...we all know it doesn't.
It takes a lot of therapy and consistancy with ASD kiddo's, and believe it or not all families do not have access or means to provide 40 hrs of ABA a week every week plus OT and speech, this one family really took a total hands on approach and was all therapy all the time...this is the claim that their child recovered from autism
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Old 01-29-2007, 02:02 PM   #520
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Thanks, Dorinda. I worry about stories like that too. My kids have a lot of interventions, but I definitely think their is such thing as too much. I also think at some point you have to accept your child. That doesn't mean you don't continue to try to help them succeed. It just means you stop treating them like they're broken.

I was hoping it would be more about what autism looks like, and how to know if your child may have it. There seems to be so little that is public knowledge.

Okay, stepping down from my soap box...
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